I'm reposting so that it can be made "sticky" and the link readily available (Thanks JohnV).

Last edited by wjjw on January 16th, 2012, 7:38 am, edited 2 times in total.

A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein

Great info! I talked about PNH in my first post and you used it in a quote, thanks. It made me feel half educated for my first post. I like the fact that the info is about bfs etc and doesnÃ¢â‚¬â„¢t relate the symptoms to totally disabling diseases(like some things I have read in the past from different sources that scared the hell out of me) and talks about it as its own disorder. It explains bfs, nmt, bcfs like it is. No Bs. Great info for all new twitchers. It talks about sensory symptoms tingling, pins and needles, etc. Tingling was my first symptom, major tingling like I was hooked up to a battery pack. I felt weird sensations in my feet which I later realized was twitching, wow! Then all hell broke loose when I did that search on the web. IÃ¢â‚¬â„¢m cool now just looking to talk and help others along the road with this goofy syndrome. Its great youÃ¢â‚¬â„¢re guiding people to read this info, it will help them out allot! LetÃ¢â‚¬â„¢s keep talking and good luck to all the twitchers and I must say, the tinglers too.

Apologies to those who have looked for the site and have found it no longer available. The company who hosted it withdrew this service. I have been redesigning the site but have still to finish it off. It will be up and running once again in the not too distant future and hopefully it will be more informative than the last version. That said, my neurologist (Dr Hart) who answered many questions for me died suddenly and unexpectedly in November last year. He had treated me since 2000 and was a great Dr. I count myself lucky to have known him and seen him on many occasions.

His all too early death will be a significant loss to further research into the little understood PNH syndromes.

Regards. Steve.

"The wonder of the world, the beauty and the power, the shape of things, their colours, lights and shades; these I saw. Look ye also while life lasts."

good website, thanks! i have other autoimmune issues like vitiligo. i wonder, if bfs is an autoimmune problem why are the most affected people medstaff? autoimmunity would not favorise a certain profession wouldn't it?